Pandoranitemare

I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

Open Original Shared Link

Thanks for that Bubba's Mom, certainly very informative reading. I have to be re-tested in 3 months, so that will show if the iron has made any difference. I guess I have waited this long, I can wait a bit longer....It took me years to get diagnosis of the other things I have, so I guess I am used to the whole process of going through banging my head against a wall for a long time first but I will definitely push the point if the iron issue has not resolved at my next appointment based on the article you kindly found, so thanks very much for that.

You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

So according to my test results I am negative for celiac but.... I am very low in iron. This surprised me very much as although I don't eat meat (I do eat fish) I am a bit of a health nut, and eat masses of green leafy veg, dried fruit (all the high iron ones like raisins, figs, prunes etc) beans such as soya beans and kidney beans and I take multivitamins and use protein powder which also is loaded with added vitamins and minerals.

The doctor has put me on iron pills - according to the bottle the 'normal dose' to treat anaemia is 2 tablets per day, I have been put on 3 per day! It's not like I am large, or heavy, I am 5ft 2" and wear a UK size 6 clothes! so there is not much of me to need a bigger than normal dose.

I have to go back in 3 months for another blood test to see if that has fixed the problem.

I was also given some info on Irritable bowel syndrome and some Colpermin capsules to try, for my stomach/bowel symptoms.

The thing is I don't know now whether to go back to being gluten free now or to wait until after the 3 months on iron, because if I stay on gluten and taking the iron does not resolve the problem (if it is an absorption issue), then it gives a genuine picture of things. However if I take the iron AND go gluten free at the same time, then the doctor will just put the improvement down to taking the iron alone.

It also is nagging at the back of my mind that I had gone gluten free for a week or so, and did a 6 week gluten challenge before the blood test, and I worry that maybe I had not eaten enough gluten...as the first thing my doctor asked was if I had been eating gluten at the time of the test.

I don't have the actual results (as UK GPs are not generally happy about actually handing over the numbers).

My feeling at the moment is just to take the iron (and colpermin) and see what happens to my iron level. It would perhaps explain why |I have been feeling even more exhausted than normal!

Has anyone else had similar results/ low iron etc?

I finally got a can appointment to get my test results tomorrow... Whilst it is a relief that the wait is almost over, my anxiety is really hitting the roof now!

What I am wondering is, what do they look at in a celiac blood test?

As I have been asked to come in to discuss the results, I am assuming the test was not 'all clear'. So I am wondering what it could have shown up, if anything? Obviously it could be positive for celiac, but is there anything else it could show up that may warrant my being recalled that may not be celiac?

Maybe I am just clutching at straws here, but I was wondering if the test covers anything else, or is it most likely that a recall means a positive result for celiac?

I know I will have my answer tomorrow, but I am trying to mentally prepare for what may/or may not happen as best I can.

Can anyone else share their experience or shed any light on how broad the testing is (in the UK). If you had the test, if you got recalled, and what happened next....

I think I would really be going nuts without this forum :-)

It seems the UK is not so geared up with gluten free stuff, especially when it comes to protein bars/powder etc.

I have found that Holland and Barrett own brand protein powder is gluten free (and states as such on the label)

I also read somewhere that Luna bars gluten free. I have found a UK supplier Open Original Shared Link, but there is no nutritional info about those specific bars so I don't know if they are the gluten free ones. Can anyone identify them and confirm if they are?

Also, if anyone is ok with small amounts of oats then Open Original Shared Link have 11-12g protein per bar, and all natural ingredients.

I have just ordered some Open Original Shared Link which are vegan, gluten free, all natural etc and has 12g of protein per bar .

In fact Pulsin have a lot of gluten free stuff on their site including all their protein powders: hemp protein, pea protein, soya and whey.

Thanks so much for the supportive replies It really helps to know that others have faced the same sort of thing.

I have finally got a cancellation appointment, so will be getting my test results tomorrow! I would be lying if I said I was not very worried about what the day may bring, but I do feel a bit more positive about the fact that I have support here, if nothing else....so thank you all for that, you have no idea how much it means to me

Hi,

I am in the process of being tested myself.

If you were to put her on a gluten free diet and she improved, it may well indicate that gluten is a problem. However, if you wanted to pursue medical testing (blood tests etc) you would then need to reintroduce gluten and put her on a 'Gluten challenge' of quite high levels of gluten for some time before testing, and there are many conflicting views on how much gluten and for how long is required to ensure accurate test results. Not only that reintroducing gluten after being gluten free can be unpleasant in terms of symptoms.

Personally, I decided to try going gluten free to 'test the theory' and after only one week, yes I started to feel better in as much of some of the immediate symptoms subsided (gurgling stomach, gas etc were less after a couple of days). I stopped after a week when I read that it was necessary to be eating gluten to get tested. I still had to do a 6 week gluten challenge, which was not nice to do and held up the diagnosis process.

In general, it seems prudent to continue to eat gluten until all medical tests you wish to pursue have been completed, and you are satisfied with either a diagnosis, or that you are sure going gluten free is the solution and you do not want to go back to gluten at all.

I am sure there are people here with much more experience who will have more to add, this is just my view as someone going through being tested.

Good luck, and I hope your daughter feels better soon.

People in my life don't seem to think that the prospect of my having to go gluten free is any sort of a big deal...It's like they think it will be as simple as deciding not to, I don't know...drink tea for a week. I don't think they get just how huge the change would be, how gluten pervades so many things and what a learning curve it is, and why I am so worried about the fact I have been recalled following the blood test. I only have some understanding from being on this forum, so I feel a little better informed.

I won't have a definite answer until see my doctor (who has been on holiday, so it is taking forever!), and I am worried sick since I have been called back I am prepared for the the test results to be positive (as I was told they would not call me if they were clear). However, everyone just has this attitude that it is no big deal if it's positive.

Am I just being over sensitive? I just want to get my results so I know what is going on, but I am worried that if it is positive that people are going to carry on treating it like it is 'nothing' and not get exactly what going gluten free means...

Has anyone else had this sort of reaction?

It sounds like you are on the right track. Definitely keep on eating gluten and push for the blood test.

Good luck.

I know it will take a few months probably to really feel better and I keep telling myself that when I want my pasta....I'm Italian so that's prob been the hardest...lol.

Thanks again....looking forward to getting to know everyone on here

Pasta is one of those foods that has a pretty good range of gluten free alternatives which are quite readily available even in supermarkets (and not too horribly overpriced compared to some gluten free foods) . It looks like pasta, cooks like pasta, and personally I think even tastes pretty much like regular pasta, so there is no need to feel like you are missing out too much.

I am by no means an expert, as I am still on the road to diagnosis....but I just wanted to say that decided to 'test my theory' and went gluten free for 1 week, and as a result had to go on a 6 week Gluten Challenge, and essentially eat as much gluten as I could stomach for 6 weeks before my doctor could then do the blood test.

Everything I have read here, and my own experience suggests that it is important to continue eating gluten until a diagnosis is reached.

Right now I am waiting on getting my blood test results, but am still having to eat gluten in case any further tests are needed, if I were to go gluten free now, I could end up having to do another gluten challenge, and delay my diagnosis even further if I need any more tests.

I hope you get some answers soon, good luck.

Thank you all so much, your replies have made me feel so much better

I made the appointment to get my blood test results ..but as my GP is on holiday I can't get the results until the 24th of April! I will be trying for a cancellation appointment the week before, so fingers crossed though.

In the meantime, what you have all said has made a lot of sense, and helped to put things into perspective for me. Whilst I will continue to eat gluten (just in case of any further tests...I don't want to jump the gun and go gluten free and have to do another gluten challenge) I have been feeling the effects of my over indulgence, and I know I need to scale thing back a bit.

I still have a few gluten treats I would like to have before 'D Day" but maybe it is good that I have some time to think about the whole process and most likely accept that it is the gluten which is making me sick and that I need to take this time to say goodbye to it...

It means a lot to know that others have been through similar, and come out the other side, healthier, stronger and better for being gluten free

Thank you!

Essentially my issue is this...

I did the gluten challenge, and had my blood test, now I am having to wait till after the bank holiday weekend to make an appointment the doctor has asked me to make to discuss the results. I am expecting the worst, as I was told I would not be called in if they were normal....So I sort of feel like I am on a 'gluten count down'. I don't want to stop just yet in case they want to do any further tests (which would require me to still be eating the stuff), but I feel my gluten eating days may well be numbered....

Whilst I was doing the gluten challenge I hated it, and only ate what I had to. I generally am quite a healthy eater, yet yesterday I was compelled to get a Chinese takeaway, I knew it would make me feel horrid, and its something I would only eat once in a while, but I felt like I had to get one in maybe before it was off limits forever!

The same compulsion made me buy a bag of those soft, fresh cookies from the in store bakery at the supermarket at the weekend.

I suddenly feel like I need to have 'just one more' of the things I do like, that maybe I only eat occasionally... because there is some deadline looming which means I will never have those things again.

What I can't get my head around is the fact of one potentially one day very soon a lot of foods I have been eating are likely to suddenly be off limits. It's the same food, and all that will have changed is knowing what the cause is, as opposed to guessing and actually having a name for the reason. It is somehow driving me to make myself feel terrible in trying to have the things I enjoy one more time all in a short space of time....and of course I am aware that I am also likely to be causing more damage with a gluten overload, as it is way more gluten than I would normally even have, as my diet is normally not even that high in gluten!

I am being an idiot...and I know it, but I am finding it hard to be rational....

I recently visited my parents and their diet is extremely high in gluten. I am still eating gluten, as I am waiting on getting my blood test results and don't want to stop in case I need further investigation, but after 2 days with them I felt even worse than usual, which I think was due to consuming even more gluten than I normally would. My whole body felt bruised, and my skin was hypersensitive as if I had sunburn, but with no redness or rashes, and even my normal fatigue was totally overwhelming!

My mum was tested a while back for celiac (blood test) it was negative. However, she continued to have symptoms such as bloating, gas etc and I just found out both her and my father have been suffering from severely itchy rashes, mainly on the lower leg area which comes and goes with no obvious cause, and has proven stubborn to treat, other thsn subsiding and reoccurring of its own accord.

Sadly my mum now has a cancerous stomach ulcer which is terminal (apparently it is in a very unusual place for an ulcer, according to the doctors, which makes me wonder).

When my mum mentioned the rashes, I tried to suggest that it may be linked to gluten, combined with the other symptoms she had - but she is convinced that as she had a negative test it can't be, and will not even entertain the idea. I know she has a lot to deal with, but she mentioned a few times how bloated she was, and is now blaming the cancer, but she did have the symptoms before it, and whilst she feels she does not want another problem, I think if it is gluten then at least it is one she can solve and make her time more comfortable.

Also my maternal grandmother had a lot of problems with diverticulitis, so there is a lot of family history with stomach issues.

If my test comes back positive, I know I will not convince her to get retested, and I am dreading the idea of suggesting testing to my brother, as I can't imagine it will go down well (he is very stubborn and 'loves' his food!) He has recently gone on a diet as he is substantially overweight....if I threw this at him, and he thought he would maybe have to cut even more food he enjoyed, well to be honest I just don't think he would even get tested.

Then I have a daughter in the middle of GCSEs. I don't really want to dump that on her just now. She is at that age where she wants to go out with her friends and eat pizza and be like everyone else, not have to be different if it turns out she is affected.

I know I am jumping the gun a bit, but I can't imagine the doctor wanting to see me about the test results is going to be 'good' news, since I was told if it was clear they would not contact me at all....The wait is killing me, and my brain is working overtime thinking of the things I may have to deal with.

Sorry for spinning out a bit, but insomnia strikes and so does the dreaded case of the 'what if's'...

"It's like ninja stars to her intestines."

That is the best thing ever!!!

Your girlfriend is very lucky to have someone who is so supportive and well informed, who can also speak up with humor and eloquence to explain the severity of the condition so well.

Oh...and I am also stealing that line

Thanks ravenwoodglass, I definitely felt better when I cut the gluten out, even for a short time, which is why I decided to see my GP about getting tested...I am looking forward to getting off the gluten again, although I can't cut the gluten until I have seen the doctor (in case I need to have gluten in my system for any further tests).

The fact that I have been called up to see the doctor means that something has flagged up with the test results. I don't know yet what that is, or if I will need any more tests yet.

Right now though I am thinking the test must have come up positive...I can't think why else she would want to see me. As she only mentioned checking for celiac.

I know it will be good to have an answer, and good to go back to being gluten free, but part of me was not expecting an answer from the blood test. I guess I just has it in my head that the blood test would not show anything (I don't know why really..I just did, maybe because I heard a lot of blood tests come back negative even with people who are celiac). I just feel a bit shocked that I may actually have 'proof' that this is real and not just me being 'picky' with food!

After suffering form symptoms for a long time, I finally spoke to my GP who decided to do the blood test for celiac following my taking a 6 week gluten challenge (as I had chosen to go gluten free for a couple of weeks about 3 weeks prior to seeing her - it was the fact that I had some improvement that made me decide to get tested).

So following a hellish 6 weeks of gluten filled meals, I had the blood test done on the 29th March.

I was told by the nurse, the results would take 4-5 days, and that they would phone if there was a problem, and if the test was clear I would not hear anything. However, if I needed confirmation I should phone the following week.

I was away visiting family, so was unable to do anything about it, and did not return until the bank holiday Friday.

When I came home had a missed call on my home phone from a withheld number, but no message (which I think may have been the doctor), as today I received a letter asking me to make an appointment to see my doctor to "discuss my results".

My stomach flipped and I started to shake...I sort of had it in my head that I would not hear anything...that the test would show nothing, and they would not pursue it...but now it seems there is something to "discuss".

Being a bank holiday weekend I can't even make the appointment until Tuesday! I am tying myself in knots about what I am going to be told.

I mean, she said she was testing for celiac, so if she wants to see me, does that mean the test is positive?... I can't think why else she would want to talk to me...

Help!! I am totally freaked out now....

Yes. Refer them to the home page at Open Original Shared Link but you could also provide a link to the forum (there is one on the home page).

Thank you, I will do

I bought a fitness magazine today which contained a page of snippets of advice from a personal trainer. One of which was headed 'Should you go Gluten Free?' The article then went on to say that there was a trend toward gluten free eating and that rice, corn, soya, potato, beans, barley and spelt were foods this diet allow.

It then went on to point out that a gluten free diet can be difficult to sustain. However it suggested that Rye bread was a particularly nutritious gluten free snack.

I am in shock that this article has actually managed to recommend barley, rye and spelt to people wanting to avoid gluten!

Of course I am going to email the magazine and point out the error.

Would it be appropriate to point them in the direction of this website for proper accurate information?

The advice given to me was the equivalent of 3-4 slices of bread a day for at least six weeks (I am currently just over 4 weeks in myself) but I have heard longer. I think it comes down to the person and how your body reacts at the end of the day!

I am a little sketchy on what the 'equivalent of 3-4 slices of bread a day' actually is... without actually eating that amount of bread. I have just been trying to make sure to have as many things that contain gluten as possible, and having horrible glutenous cereal, pasta etc as much as possible. I certainly feel like I am getting enough gluten!

I am very new to all this, and learning as I go, but from what I have encountered, plus information from the lovely people on this site....

This is how things have been for me so far:

I did a trial of being gluten free for 1 week (which did start to help with my symptoms), but I went back to eating gluten having discovered that it was very important to be eating gluten to be blood tested.

I then arranged to see my GP, and had been back on gluten for 3 weeks by the time I got an appointment. My GP still felt it was necessary to do a 4 week gluten challenge (because of my one week gluten free period), which I am now undertaking, so in total it will have been 7 weeks back on gluten, with the final 4 weeks really making sure I get plenty of gluten every day.

There is so much conflicting information on how much gluten and for how long, a person needs to ensure an accurate blood test. However, from what I have learned, the simple fact is that the blood tests are not that accurate, and there is no standard length of time to consume gluten before testing which will aid the accuracy other than 'the longer the better!' it seems.

It would also appear that a blood test can only be the start of the journey, and even a negative test can still lead to additional referrals and biopsies etc to get a proper diagnosis...and all the while eating gluten is a must, right up until all tests are over!

Personally, I am not sure I will be able to keep up eating gluten for that long...even this gluten challenge is hard, let alone the prospect of even more weeks/months for more tests if required.

Good luck on your diagnosis journey

Thank you all so much. I really appreciate the support, advice and kind thoughts.

I am so glad to have found this site, and that I took the plunge to sign up and post.

I have been around the Internet, and around forums for a good few years, but can honestly say this is the most friendly, welcoming and helpful one I have ever had the pleasure of finding.

I really appreciate you all for taking the time to respond and hope that one day I can return the favor in offering support.

I have been having increasing problems over the past few months, until it reached the point that following some online research I guessed that gluten may be the cause, so I went gluten free for a week. Whilst it didn't resolve everything, I did begin to see some improvements. However, I then discovered that in order to test for celiac the person must have been fully eating gluten (and there was much conflict about the duration and quantity!) So, I decided to quit with the gluten free and make a doctors appointment.

Despite having only been gluten free for one week (3 weeks prior to my appointment) my doctor has still insisted on my doing a gluten challenge for 4 weeks before doing the blood test.

It would seem (from what I have read) that the blood tests alone are not always 100% reliable, and even less so if the person has low or no gluten intake in the time leading up to the test.

I am finding it very hard to really make sure I get the maximum amount of gluten in my food, but keep telling myself it is necessary, and if I do it now it is be better than being gluten free for much longer and then having to maybe make that choice to eat gluten again for the sake of testing further down the line (as some people have faced) I understand that for a lot of people going back on gluten is just too hard, and makes them too ill.

I am just holding on to continuing to be ill in the short term, so get better in the long term, hopefully with an diagnosis.

Good luck with your diagnosis journey.

I had night time insomnia until I got onto a good multivitamin/mineral/trace and fish oil. Being off gluten so you can absorb them is probably important though...

That is interesting...

I have been taking multivitamins, fish oil and calcium+vitD supplements for quite a while, but I guess it is possible that they are not being absorbed well.

Hopefully things will improve when I am done with this challenge etc and can get back on being gluten free then